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Thursday, 19 September 2013

WHAT'S IT LIKE TO TAKE PART IN RESEARCH?

I must declare that I work one day a
week for the National Institute for Health Research – Clinical Research
Network. This is, therefore, as much a memo to myself as it is a plea to
others.

Is taking part in a research study a good
experience?

Would you do it again? Would you
recommend it to others? Did you know that you can help to inform and shape what
research is about? Would you like to know what happens to the research that you
helped as a participant? Would you be keen to know more?

It seems particularly odd that, despite all the
excellent work to help make research studies and clinical trials a standard
part of NHS services, treatment and care, we don't know the answers to these
simple questions. The reason is that mainly we don’t ask.

More people than ever are given and opportunity
to take part in research trials and other studies. Much work has taken place to
involve the public to help focus on issues that are important to patients and
their carers. This involvement has helped improve the questions being asked,
the design and delivery of research studies.

There have been significant improvements
in the length of time it takes to get a research study up and running through
the NIHR Clinical Research Network. This will lead to the findings being applied to improve people's experience of care.

Last year over 600,000 people took part in NIHR
studies and yet we don't routinely ask them about the experience. There are
some examples of questionnaires and surveys by individual facilities, Trusts or by
particular researchers but we don't universally gather people’s opinion, their
views or perspectives about research.

Such basic questions. Such a simple thing to do.
Such a basic courtesy to those who have given their time and effort involving
additional consultations and procedures, additional visits to clinics.

The recent publication of the results of the
Friends and Family test is a good example of the NHS seeking to ensure that the
voices of patient, carers and family are listened to and used to effect
improvements in services, treatment and care. http://www.england.nhs.uk/statistics/statistical-work-areas/friends-and-family-test/friends-and-family-test-data/

But...what about research?

Patients and their carers agree to take part in
research for a number of reasons. We do so willingly with a general altruism
and perhaps a modicum of hope. We accept that taking part often involves
further tests and checks. Most of us do not seek reward. Acknowledgement, a
thank you and an update of what happened to the study is always appreciated.

Gaining ‘customer’ feedback is increasingly
part of our everyday lives from shopping on Amazon to travel and holidays. Tim Kelsey wrote recently on Why NHS England is launching 'TripAdvisor'
for patients via @Telegraph http://fw.to/Ao6wNxKWhy not a ResearchAdvisor?

Sadly, I still here the words
'research subjects' as if we are merely an extension of animal testing - fodder
to be experimented upon rather than human beings. It remains ‘us’ and
‘them’.

If we are to genuinely make research part and
parcel of the patient and service user pathway then we need to address this
fundamental relationship. Seeking and analysing the opinions of clients will
help create a step change in the way research is delivered. Anecdotally, I
suspect that we will gain a huge amount of appreciative positive feedback but
we will also hear where we can make improvements.

The best way to ensure that the
feedback we receive is relevant and of value is to actively involve patients, service
users, carers and the public in the thinking, planning, design and application.

The people who use our services will
help us ask the right question in the right place and at the right time.

The Mystery
Shopper campaign was a great start at understanding what people can find
out about research in their local area. It also worked because it used local
people to go in and ask the questions.

But most importantly it is changing
the relationship. It is patients leading the way. Patients as Leaders in
Research – so how can we help develop more people asking questions?

I have begun MY list of questions that
I would like to see asked. What are yours?

1. Were you given any information about research
studies and clinical trials at the hospital, clinic or practice relevant to
your needs? (addressing ACCESS to Research)

2. Were you given information about having a say
in research - getting actively involved to help inform, form and influence the
research agenda? (addressing ACTIVE INVOLVEMENT with Research)

3. Were you given information about keeping in
touch with the actual study or research in general? (addressing ENGAGEMENT for Research)

4. If you were given information or spoken to
about research (addressing SATISFACTION about Research experience)....

Were you spoken to with respect and dignity?

Did you have enough information to make an
informed choice?

Did it involve any additional appointments?
We're these inconvenient?

Are there any comments you would like to add?

Would you be willing to take part in further
studies?

Was it an experience you would do again?

Would you recommend taking part in research to
others?

This should be finished with a thank
you for taking part in research and for completing the survey.